Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...
Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.
And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.
"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."
Wednesday, March 9, 2011
Prebiotics...food for gut flora
Inulin can be rough on the digestive system if taken in large quantities. Little man has clearly always had a sensitive stomach and previous supplements tried with inulin and FOS give him gas and cramps. He also has a secondary dissharchadise deficiency; he lacks the enzyme to break down saccarides (starches/sugars) difficult for him to process. Even his arrowroot starch has to be carefully cooked down to syrup (thereby breaking it down before his body has to) and in smaller quantities than his body could otherwise handle without this enzyme deficiency.
The Kirkman’s probiotic he is on does not have inulin, it has indigestible components from pine tree- is what I am told from the company. He is tolerating it well, but without the inulin and an absence of good indigestible fiber in his diet- the bugs have less to feed off of to flourish....which I believe may be one of the reasons why he is "peaking" on the probiotic.
Increasing the morning dose (and only giving once/day) did not fare well yesterday. He was "off" all day. He is better already today with his dose of 1/3 sprinkling capsule with a small tsp of hemp milk. He does well with two doses a day, so I'm trying to decide if he needs 3 doses. He tolerates it well mixed in with his hemp milk, so may just start adding it to his formula but it is difficult to control the dose that way if he does not drink the entire bottle.
I still am looking to find the connection as to why it affects his behavior/mood/sleep so well. Dr.J has done much research on the gut-brain connection but admits it is not well accepted by neurologists (that a food allergy can affect behavior/mood/sleep. I have seen it happen first hand, not only in my own FPIES child but my own other children as well as many cases of reports of the gluten/casein/soy free diet for ASD kids. My thinking is if the neurologists aren't seeing it, they aren't looking hard enough. It is true that not all ASD are affected by food allergies or respond to the diet, but it is also clear (by teachers and parent accounts and research) that some do. Dr.J suspects those FPIES kids that also experience behavioral changes with food reactions have a genetic component shared by those affected by food allergy in the ASD community. I'm not a researcher or an MD, but as a parent- I would have to agree. I look forward to the day when those pieces become more clear....not only for our FPIES community but for ASD community as well. For now, Dr.J did give me a tool to help assess his pain, through his behaviors- an ABC scoring sheet (she also uses this in her research study)...it was alarming to calculate how much pain he could be in based on his non-verbal cues of his behaviors/mood/sleep.
I am interested, and look forward to; learning more about food allergy and brain connection (coined the brain-gut connection).